Breakdown the First

As some of you may remember, we are currently awaiting results of the genetic testing ordered by my neurologists.  Specifically, an Ataxia panel, which covers various forms of spinocerebellar ataxia and other fun things.  Some of these things could kill me soon-ish, some could result it partial or total paralysis, restriction to a wheelchair, a long slow decline in which I am no longer able to breath on my own or swallow, possible dementia, and a host of other heart-warming symptoms.

The test results are in but are being "held" until I come in in person.  That was initially going to be in July, but after some mild prodding, it got moved up to June.  It's also probably worth mentioning that when I asked at my last appointment what the genetic tests were for, they refused to tell me, even when I asked, "So, what are you looking for with these tests?"  The response was, "oh, don't worry about it, if anything comes back positive, you'll have lots of interesting things to talk about at parties."  Seriously.  Not making this up.  This is not the first time this has happened.  I've let it pass before.  I don't intend to do so again.

Fortunately, I am both literate and not a complete fool and was capable of puzzling out, in a manner that would do Sherlock Holmes himself proud, what it was they were looking for.  In other words, I looked at the lab paperwork they handed to me.  I didn't even have to whip out my large vocabulary or write anything down to look up later.  It said, in plain English - Ataxia Panel.  Clearly, my deductive reasoning skills are to be feared and worshipped.

Also, as I am familiar with the use of both a computer and Google, and have devoted pretty much the last 10 years of my life to learning how to do research, I had already guessed by the range of questions I was being asked that they were getting interested in my cerebellum.  This was confirmed when I cornered the resident who also "cares" for me and asked what was up. Apparently the first MRI they did, when they re-examined it, showed some possible cerebellar atrophy.  Of course, they didn't notice that 10 months ago.  Why that is is something I best not speculate about...

Anyway, this is what I've been coping with since late April and more so the past few weeks since I found out that they won't tell me my results by phone or email.  I've been trying to stay calm and upbeat, and have been reasonably successful, but the toll is starting to tell.  I have more trouble sleeping, even though I'm exhausted.  I've had a few nightmares about being paralyzed and able only to move my eyes or being told I only have a few months to live (highly unlikely, but still...).  I have tried to be optimistic and hope that they simply don't have conclusive results to share or that someone just cocked up the test (if that is the case, I will be highly pissed that they couldn't just tell me that).  But I also catch myself at odd moments trying to make a deal with...I don't know - God, myself, Obi-Wan Kenobi - "just let it be my legs; please not my eyesight; please, don't make me loose my mind; please, as long as I can still read and craft and eat..."

I've managed, for the most part, not to have a crying jag, until last night.  Right after a shower, I just lost it and started blubbering.  Fortunately, Tom seems to have a 6th sense for imminent ferret-crises and he came to comfort me (because he is awesome).  And Oreo overcame his deep-seated fear of the bathroom to join us (because he was lonely in the living room).  The truth is, hard as I'm trying to be brave and not to whine or be morbid or be an attention whore, I'm terrified.  I'm furious - no one should have to sit and wonder about things like this for weeks on end or be treated like an idiotic child by their doctors. What is going to happen? There aren't a hell of a lot of treatment options for ataxia - care is primarily supportive.  I'm afraid of what they're going to tell me and I'm afraid of the inevitable confrontation when I finally tell them how inappropriate I find their behavior.  Smack-talking to the contrary, I usually try to avoid such things.  And partly it's because I am so very angry that I'm worried, because I know that the more "overwrought" I seem, the less seriously I'll be taken (if that's possible).  

I am at least happy to have found, in my research, that there are specialists here who deal with Ataxia and they are very highly regarded by their patients.  And I do have a wonderful support system.  I just have to get through one more week.

Buttoned Crochet Capelet

Buttoned Crochet Capelet_3
Originally uploaded by sewstitchy

This capelet by sewstichy is breathtaking. Relatively simple stitches and great construction and details (I love the button band) make it an awesome potential accessory.  She provides a bit of detail in her caption on Flickr.

Yay, haircut!

I got my hair cut today.  I went with a slightly shaggier/more texturized bob and short bangs again.  I really like it - it's a bit more fun to play with than my usual sleek bob.  I did miss styling wax and stuff from when I had super short hair - being able to run your hands through your hair, muss it up, and have it look cute was fun.  Plus I really like my hairdresser, which is a first and also very nice.

Also, my neck is hair-free again.  Thank god.  I have no idea how anyone copes with a mullet aside from looking like crap on toast.

Our plants seem to be settling in well.

I attempted crocheting in the car on the way to the salon - my bag pattern is pretty auto-pilot, so I can chat and work.  I don't think it's the best idea for me - I got a tiny bit motion sick and so put it away.  Oh well, fortunately I usually like staring out the windows on road trips, so if I have to pull a long haul in the car anytime soon (I really, really hope not) I won't be too miserable.

Shopping IS Therapy, Dammit

Today I slept most of the day due to the exhaustion of the most recent skirmish in the mouse wars.  I had actually set an alarm for 11 AM, figuring that would give me more than enough sleep.  I woke up, was still really stiff and hurty, and so decided to read and stretch a bit in bed before getting up.  The next thing I knew, Oreo was barking and wagging his tail in my face because Tom was home from work.  Sigh...

Anyway, I had been wanting some fusible interfacing for some projects I want to work on and Tom had wanted to go to a Home Depot to poke around, so we set off.

I scored my fusible interfacing (at a discount, because the instruction sheet had left marks on the interfacing) drooled over fabric, grabbed some canvas tape, and a bias tape maker.  Serious fabric drooling.  I should just get over my cheapness in not being willing to pay $8/yard for pretty quilting cottons, but then again, if I did that, we'd be even more poor than we are and be buried in fat quarters or single yards fabric useful only for making bags and pillows and stuff. Mmm, bags...

Ahem.

Anyway, we also dropped by a Best Buy, because the stupid vermin had chewed through the cord on the motion sensor for the Wii.  Shows you how much Wii we've been playing.  We also (after much wandering and annoyance) discovered that Lego Indiana Jones has finally dropped in price.  Sweet!!!!  As it seems to also be good for my motor skills, all the better!

Then we went to Home Depot and wandered around the nurseries.  We now have baby sweet basil, mint, rosemary, lavender, and Italian parsley nestled happily in a trough planter and smelling delicious.  The aloe has been replanted in the pseudo-Predynastic pot.  And our seedlings of oregano, curly parsley, and lavender seem to be doing well despite early depredations by the vermin.  The papyrus plant seems to be doing okay as well.

I am very excited by our little garden - I've never done much with plants before, so I'm having fun pestering Tom with questions.  I'm also looking for either  some better options or tricks in iCal for reminders so I will remember watering and other household chores (this has become a major problem for me).  And I'm looking forward to cooking with fresh herbs, figuring out good drying methods, and making sachets.  

Therefore, I am in an extra good mood this evening, despite the lateness of this post. Tomorrow I get to go for a haircut, which will make life even better as I'm currently getting uncomfortably close to a mullet in the back (I cannot stand hair on my neck anymore).   Better, a friend is taking me, thus sparing Tom from having to hang around a girly salon for an hour. He gets to stay home and play Wii.  :P

Mouse Wars: Revenge of the Humans

As I have mentioned before, we have mice.  Not the nice little pet kind or even the kind that you feed to other pets.  No, the wild invader unwelcome kind.  Oreo utterly failed at mouse deterrence.  The live trap apparently operated as an example of survival of the fittest and captured only the stupid ones.  The glue traps the exterminator gave us failed utterly.  Snap traps are useless.  So, we finally turned to poison.  

The type of poison we used is pellet form and is essentially an anticoagulant at a dosage massive for mice.  For a while, I was convinced that all the mice actually had high blood pressure or abnormal blood clots and that we were just helping them out, because they were still merrily piddling behind (and on) the lower shelf of my bookcase and behind the TV.  Or that, like some rats, they had become resistant. 

Eventually though, all but one has departed.  Whether this world altogether or merely our apartment, I don't really care.  

The apartment had started to smell like an enormous hamster cage. (And I have now ensured that we will never have visitors again...) My allergies were going nuts.  So, today, we decided to move the bookshelves and the TV and other furniture, use the ShopVac on the hardwood floor behind and thoroughly saturate the baseboards with Lysol.  It seems to have gone pretty well.  I've only had to trash a few old notebooks that were icky with vermin leavings.  My throat did start to close up a bit near the end and I'm weak all over, despite having only moved books back and forth and dusted while Tom did all the actual heavy labor.  I think it was worth it, though.  I think we'll have another few rounds of spraying the baseboards with Lysol or Febreeze or vinegar (suggestions for removing that odor that don't involve killing all of us are welcome in the comments) and we've left bait and a mousey obstacle course just in case they mount a counter-offensive.  

Image courtesy of Madprime, available at Wikimedia Commons

"Tita De la Garza"

"Tita De la Garza"
Originally uploaded by du_buh_du_designs

I haven't featured a doll in some time, so I think this is a lovely one to revive interest with. Her features are lovely, as are the clothing and accessories. Even better, she's a character from a novel. I haven't read "Like Water for Chocolate" but I love it when people take inspiration from books.

Fog

The past week seems to have been especially "foggy" for me - I've been needing/wanting to sleep much more than usual, my brains aren't working quite as well - lots more forgetting, total attention lapses, loss of focus, and general duhhhh-ness.  My pain levels have been a bit higher too.  And I've been disinclined to do much besides stretch out in bed or on the couch and read.  I'm not really depressed, though a bit disgusted with my inertia, just, I guess exhausted.  I certainly am finding it harder to motivate myself to do much.  Hopefully I'll snap out of it soon.  

Interestingly, Oreo has been far cuddlier with me lately as well.  I don't know if he feels a bit ick, if he senses that I don't feel too hot, or if it's just coincidence.  

Spock

spock2
Originally uploaded by samandchichi

It's a Spock amigurumi! How geek-tastic is this!??! I love the ears.

Behold my mad polymer clay rolling skillz!

I made another set of crochet hook handles, as I wanted the H and I hooks for a project I started recently (I got the yarn courtesy of a ride to JoAnn's - thanks, G!).  Playing with the clay really is ridiculously fun.  Eventually I'm going to pick up some sandpaper to see how well I can smooth the handles up and get rid of fingerprints, etc.  The pale pink and white marbled handle just did not want to be photographed despite my husband's best efforts.

I really can't decide which I like the best.  I will be interested to see if the black and white handle picks up stains from my fingers...

I suck!

I failed in my goal of posting something everyday!  Oh well, everyone needs a day off now and then, right?  Yesterday we went on a nature walk after I made the oh so mature demand of my husband:  "I want to see bunnies and duckies!!!!"  Oreo didn't get to come because the park district is speciesist.  It was pretty fun - we got to get ridiculously close to some cottontails and watch them for some time.  Same with a pair of mallards.  And there were trees and flowers and the weather wasn't too warm or too cold.  Yay!  I had a brief, weird moment where the toes on my left foot felt like they were burning for no apparent reason.  Only lasted a few minutes.  Didn't bother me too much, but I wish my peripheral neuropathy or whatever the hell that was had done that in the depths of winter - then my toes might have been warm.

I also got to use my Borders coupon and scored Getting Started Knitting Socks by Ann Budd.  Tom unkindly pointed out that it wasn't going to do me much good as I don't so much know how to knit yet, but I stuck my tongue out at him and called him names, so it's all good.

All of the above totally wore me out, so I vegged out on the couch most of the rest of the night, save for a brief interval wherein we bathed Oreo.  He's only just now forgiven me.  And we changed the bed and fluffed up the down mattress pad and comforter, which made getting into the bed way more blissful than usual.  I woke up today with some major weakness in my left hand, but I'm managing to type without too much trouble.

Eating miso soup

Eating miso soup
Originally uploaded by naomi sews & sews

I love this happy amigurmi girl! So cheerful looking. And as I have a fondness for miso soup, all the better. The tiny bowl with the tiny mushroom pattern is also great.

Bleh

I think anxiety on a few fronts is starting to take its toll on me - I'm pretty tired and weak again today and slept a good 12 hours last night. My brain is fairly foggy as well today.   I did enjoy a walk at Promontory Point with the husband and the Oreo.  The weather has finally warmed up and, true to form, I contrarily find it too warm.    Oreo totally failed yet another are you a dog or an alien creature test.  We saw a cottontail in a patch of clover.  Tried to point it out, Oreo was oblivious.  We got within 10 feet of the bunny, who seemed rather unimpressed with the potential threat Oreo presented, and then Oreo finally saw the bunny.  He made a half-hearted lunge at the rabbit.  The rabbit ran off to some rocks, but didn't even bother ducking into a burrow or otherwise hiding.  Oreo gave up after running about 3 feet.  Yeah.  Didn't even bother to bark.

He did, however, talk smack/attempt to murder to a larger spaniel of some type, a retriever mix, and a Bichon Friese.  And, once the Bichon's owner had taken her out of sight, he totally worked the Oreo-strut - the proud little pimp walk he pulls when he's "run off intruders."

I do finally have photos to post of my latest projects.  I'll get around to those later today or maybe tomorrow.  I'm mostly inclined to curl up on the couch and watch Waiting for God or the new Doctor Who or something similar.   (Yes, I am still loving Netflix + Roku)  Hurray for ambition!

rasta-pus

rasta-pus
Originally uploaded by kidmissile

The name, the creation - what about this is not totally and utterly awesome?
I myself have not gotten around to crocheting octopi, but this may inspire me to start. The legs look super fun and the potential for fun customization is enormous.

Check out the original photo on Flickr for more information.

teeny tiny peacock

teeny tiny peacock
Originally uploaded by VoodooMaggie

VoodooMaggie created this amazing, shimmery little peacock and I love it!

The advantages of being mildly annoying

As I mentioned a few days ago, my neurologists are playing keep-away with my test results. They were also going to make me wait until July to even have a chance at catching the metaphorical ball.  Being rather displeased with this state of affairs, I started emailing my attending neurologist at least once every weekday asking about an expedited appointment.  It seems to have worked.  I have an appointment in about 3 weeks.  Still longer than I'd like, but I suppose it will do.  Three weeks of stewing, wondering what's wrong and why they couldn't tell me in an email is better than 8 weeks.  Hypothetically, it's nothing that's likely to kill me within either 3 or 8 weeks, right?

Some of my readers may be wondering why I didn't call instead of email.  Well, you see, he can't remember his voice-mail code.  So, he can't retrieve voice-mails.  I have no explanation for why he hasn't gotten in touch with IT or whoever to get a new code.  I have suspicions that he's already done that so many times that they've told him to get lost, but these are only suspicions. The only other numbers I have are the main clinic number, and I'd rather not antagonize the receptionists and clerks (yet), and his pager number which, no matter how pissed off I am, I'm not going to abuse with non-emergencies.

I suspect there are going to be regular entries from me psyching myself up for the "here are the many ways in which I have found your behavior to be unacceptable" conversation coming up in June.  

Imitation Predynastic Pot

Because I am a huge, huge nerd, I decided that I needed to spiffy up the terracotta planter we bought with some painting.  It took me forever to decide what to do, though, until inspiration struck - I could use some Egyptian motifs!  Now, with a few exceptions, most Egyptian pottery after the Predynastic period is pretty boring, so of course I stuck with the Predynastic.  In particular, I borrowed some motifs from white cross-lined ware - a boat, a dancing figure, and a hippo.  And here is the painted pot, sitting next to some papyrus stalks.

Awesome!

I found this just a while ago and now I desperately want to try it.  Sorry Jewish, Muslim, and vegetarian friends, but how can I resist pork plus what essentially amounts to a craft project?  I think the addition of a few spices to the ground pork would be important, and I probably wouldn't bother with the hotdog the guy had as the internal part.  Check the link for more details:

theWAREHOUSE: Baconpig

No pictures

And I failed to take photographs again today.  My back and legs are extra grumpy and I was extra tired and spent way more time in bed than usual today.  And then went grocery shopping.  My husband continued his record of always managing to inadvertently pick the worst possible cart.  I, yet again, refused the siren call of the riding cart things.  However, we stocked up on groceries, including the makings for a few new recipes to try - I will try to post how they turn out.  And I stocked up on Ben and Jerry's Cinnamon Buns ice cream which, I'm reasonably certain, contains cocaine or heroin as I inevitably eat the entire pint and still want more.  It has replaced Dublin Mudslide in my affections.  

I also totally forgot to get photos of the brain slug before it was given away.  However, the slug is GREATLY appreciated by its new owner and I have begged for in situ photos.  

This entry is useless without pics

Despite having been fairly productive on the craft front the past week, I can't post pictures today.  It's been nasty and rainy and dark all day, so decent photos aren't happening.  Maybe tomorrow.  I will, however, tantalize you all by telling you that I painted a flower-pot in imitation of Predynastic Egyptian white cross-lined ware.  And I finished making a brain slug for a friend.  It's being presented this evening, and I hope to get a photo.  I also finished my gift for my mom for Mother's Day.  Yes, I know it was last week.  Still have to take a picture of it and get it in the mail.   So, with luck, there will be some photos posted this weekend.

I also have to decide which fiber project to start next: 

• Amigurumi for some friends (not saying what exactly as some of them read this and I'll be all grumpy if I ruin the surprise)
  
• Amigurumi of my parents for their 30th anniversary next month
• Amigurumi with Egyptian themes for some professors of mine
• My very first knitting project.  I have to actually decide WHAT to make.  I'm not that inclined to make a scarf, I know it's the typical thing, but it seems sort of...bleh.  Maybe a hat?  Suggestions are welcome.  My preference is for something that isn't a huge undertaking at the moment and, preferably, doesn't require a large quantity of yarn (I'm running out of storage space, despite concerted attempts to use up my stash)

And I have the following things I want/need to do:

• Design and carve some lino blocks for fabric printing/stamping
• Sew some tea towels and table linens
• Sew the pajamas and dress I have fabric and patterns for that have been hanging around since January
• Sew a (or possibly multiple) hook and needle cases
• Sew a bag or purse of some kind with the sweet fat quarters I have
• Start playing with watercolor painting, if only for the hilarity of how craptastic my paintings will be

And, I have some research to do in the next few weeks to see if I'm going to climb back into the academic saddle.  I suspect there will be chafing.

Not Cool!!!!

So, last night I emailed about my test results and have pretty much gotten the run-around.  My doc told me about the myopathy, but I knew that already from the EMG doctor.  My genetic tests have been "held."  My neurologist told me to schedule a follow-up ASAP.  So, I did.  ASAP is July. I emailed him back and pointed out - dude, July.  And asked what "held" meant.  

"Held," for those of you wondering, means, "I'll tell you when you come in for your appointment."  He also said he'll try to expedite my appointment.  He damn well better.  I have to figure refusing to tell me unless I'm there in person is probably not happy, wonderful, you-have-rainbows-and-unicorns-coming-out-of-your-ass type news.  I am not sitting here for two months wondering what the hell is going on.  We played that game after the spinal tap last year and I AM NOT doing it again.

There was no mention of the MRI results.  Also, still no superpowers.